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We’ve all been told at one point or another to trust your gut, but it’s a saying that gains new meaning when you become a parent. A parent’s intuition is a powerful force in advocating for their children, especially when it comes to healthcare. When little ones aren’t yet able to articulate exactly how they feel, parents give them a voice. And oftentimes a parent’s persistence is what leads doctors to a life-saving diagnosis.
This was the case with Bianca Pauro, nurse and mother of Ellerie, a vivacious toddler who was diagnosed with stage IV brain cancer at the age of three. Brobe spoke to Bianca about Ellerie’s journey to a diagnosis and learned that many parents struggle to get answers when their child is sick.
To help parents who may be in the same shoes, we have four ways that you can advocate for your child in healthcare, as well as some advice from our interview with Bianca.
Here’s how you can ensure the best for your child and their team of healthcare professionals.
Being your child’s advocate in healthcare starts with trusting your instincts. If you feel like something is wrong, don’t be afraid to speak up. While doctors should be respected and possess real expertise, you have something that they don’t— the big picture of knowing your child. You are with them every day. You know their habits, routines, and personalities. Things that look normal in other children may be abnormal and a sign of something serious in your child.
We asked Bianca what advice she’d give other parents who may have suspicions about their child being sick.
“The advice is: you know your child best. You absolutely hope there is nothing wrong and they find nothing, but you do what your gut tells you,” she says. “Fight for your child, ask for second opinions.”
As a parent, you won’t know all the answers and there will be times where you won’t understand what a doctor is telling you. If you don’t understand something, ask questions. There’s no need to worry or be embarrassed if you don’t know a term or procedure. This is your child, and you should have all of the information necessary to make informed decisions.
Don’t be afraid to ask the hard questions, too. These questions may include:
Respectfully questioning a doctor's decisions and wanting to know the “why” behind everything is not a bad thing. In fact, asking questions helps create strong parent-doctor communication, which ultimately leads to a better overall experience for you and your child.
It can be overwhelming to remember everything doctors are going to tell you. Taking notes is a simple yet effective way to keep track of everything. Bring a notepad whenever you have a doctor’s visit. Ask your nurse for a copy of any paperwork and records before you leave an appointment. Be sure to keep notes in one place and bring them with you whenever you visit a doctor or hospital. Your notes and records can contain:
It can also be a huge help to take your own notes at home to report back to a doctor. Document any odd behaviors your child may be exhibiting, high temperatures, lack of appetite, etc. When you see a doctor, you will be able to accurately describe everything that has been going on.
This is what Bianca did for Ellerie when she first started seeming more tired, less hungry, and not herself. “I decided to lay it on the ER doc— all of my ‘something seemed off’ feelings. I informed him that I’m a nurse and none of this makes sense to me, but pleaded that I had a list and dates of odd behavior for Ellerie.”
Having notes from events at home can give more to go off of than a suspicion and can help doctors pinpoint issues quicker.
One of the best resources for Ellerie’s parents through all of this has been people who have been there before or are currently going through a similar situation. “Honestly, the resources have all found me,” Bianca explains. “I was not looking, but they all came looking to help in the most amazing way.”
She found Facebook groups and Instagram to be the most helpful and supportive. “So many people walk in these shoes and they can help make you feel less alone.”
Online communities for parents can give support that some of the closest people in your life can’t provide, simply because they understand what it means to have a child with cancer. There are many benefits to connecting with other parents, including getting advice from experienced mothers and fathers and lessening stress, depression, and anxiety.
The Elliott Superhero Robe is specially designed for children going through treatment or recovering from surgery. With features like button-up sleeves and pockets for medical equipment, the robe makes it easy to stay comfy and clothed while getting vitals taken, wearing an IV or drain, or being hooked up to a monitor. In addition to being practical, the robe comes with two capes and an eye mask, which allows kids to use their imagination to unleash their inner superhero.
“We love the softness and the amount of pockets the robe has!” Bianca told Brobe. “The buttons make it super easy to take off and accessible for whatever we may have going on; lines, heart monitors, and IV tubing.”
To donate, click here. A donation of $92 covers the cost of one robe and domestic shipping, but any and all donations are greatly appreciated.
If you would like to donate directly to the Pauro family, you can visit the family’s GoFundMe page.